A month ago, I met with the leaders of the Epilepsy Foundation of Virginia. It was my first ever contact with the Epilepsy Foundation. Though our son had epilepsy since he was 12 years old, it was so well-managed by medication, that we were never the ones, of the over 3 million Americans afflicted, who looked for help or support. Fortunately, he wasn't one of those children who have random, uncontrollable seizures. His were almost predictable--at least he knew when one was coming. And they were infrequent, and almost always at bedtime when the lights went out. We hated to see him have a seizure-- it was frightening and it hurt to see his precious body unconscious and tightly clinched in an almost fetal position. But death? No, we didn't think about that.
As the doctor told me when he was young, "The worst thing that can happen is that he will have a seizure! As long as he doesn't hit his head, he'll sleep it off and be okay after a few hours." The doctors told us Joey could do anything but skydive or scuba dive. Back then, the goal was to prevent Joey from identifying too strongly with his epilepsy, to encourage him to live a full and active life. My job was to not "over-mother" him, but to let him grow up unfettered by fear. I think we more than succeeded at that, but now we sadly know how very ignorant we were about the true danger epilepsy posed to Joey.
That was before the syndrome that killed him had been identified and labeled. That was before we had heard the term SUDEP-- Sudden Unexplained Death by Epilepsy. We discovered that term the day after Joey died, when we were in a state of shock and numb disbelief and googling the words "death by epilepsy". That was before we knew that our son, with his nighttime seizures, was at higher risk for sudden death. That was before we ever heard the unimaginable-- that epilepsy kills as many people in a year as breast cancer.
On Sunday, our family is going to walk for epilepsy. We are going to share our tragic story and hopefully we can increase awareness about SUDEP. We hope we can spare others from the heartbreak we have been through.
Please check out our fundraising site in the sidebar on the right.